Mothers' experiences of giving medicines to children with severe and profound intellectual disabilities-The impact on time.

Abstract

BackgroundChronic health conditions experienced by children with severe and profound intellectual disabilities are accompanied by numerous challenges because of the prolonged period over which children take medication and the large number of drugs they take. Mothers experience many challenges in giving medicines, from difficulties in physical administration to manipulation of medication, covert administration and alternative formulations. The aim of this study was to explore mothers' lived experience of giving medicines to children with severe and profound intellectual disabilities.MethodsA hermeneutic phenomenological approach was used. Semistructured face‐to‐face interviews and participant diaries were adopted for data collection, resulting in 28 interviews undertaken and 7 diaries completed with mothers of children with severe and profound intellectual disabilities. Van Manen's method for thematic analysis was used for data analysis.ResultsThe concept of time and the impact of giving medicines were apparent, mothers being ‘always on call’ and the constant full‐time pace of their caring role evident. There was little spontaneity in their lives, dampened by the routine of giving medicines and their caregiving role. The necessity to be prepared and organized was highlighted as important in ensuring children got their medications on time and safely.ConclusionsThis study provides insight into the phenomenon of mothers' lived experience of giving medicines to children with severe and profound intellectual disabilities. It has enabled exploration and familiarity with the lifeworld of mothers and offers meaning on the phenomena of giving medicines. It was concluded that this experience is a relentless and challenging one, yet appears invisible as an element of care in professional discourse. Through addressing the gap in understanding and exploring the meaning of this phenomenon, it may be useful in developing care for mothers and children with severe and profound intellectual disabilities.